Endometriosis UK
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So much pain

Hi everyone,I'm new to this site but feel like I need someone to understand what I'm going through. I have had an ultrasound and have been told they have seen endometreosis and have been referred to Gyny but I'm in so much pain. I'm taking mefanamic acid and paracetamol but neither seems to help much. I am walking around with a hot water bottle constantly and my hubby doesn't seem to understand how much pain this can cause.

2 Replies

I wonder if they actually saw that you had an endometrioma cyst. Endo itself cannot be spotted on a scan, but cysts can and cysts tend to give you round the clock pain - where as endo is cylical and is worse when it is active at the time of having a period. Endo is a surface growing disease which is why if cannot be spotted on an ultrasound but there might be clues that there is endo, from adesions which may have stuck organs together as well as the cysts.

No one will know for certain if it is endo, and the extent of the disease inside until you get a laparoscopy so you should definitely push for that as soon as they can manage it when you do speak to the gynaecologist.

Normal practise these days is to try you out on GnRH drugs for 6 months before hand but it couldbe more trouble than it is worth and quite honestly does nothing to remedy the situation, it isjust a stop gap to delay you going on the waiting list for surgery. so my advice would be refuse that GnRH menopause drug treatment and say you want to just go for surgery asap.

Keep on top of the pain killers do not let them run out before topping up even if that means setting the alarm clock for the middle of the night to wake up and dose up. Better than waking in agony and having to start all over again.

You could speak to the GP about moving up a notch on the pain killer ladder to an opiate pain killer just while you await surgery, but it isn't a long term solution and is certainly addictive and can be hard to withdraw from when you have the op and no longer need it afterwards.

Have a look too at the endo diet and looking to remove trigger foods and drinks from the diet that make the pains worse.

Caffeine, alcohol, fizzy drinks, citrus fruit juices are all known to aggravate pains (not all in everyone) but you need to do some home experimenting to see which are bad for your pain levels but cutting them all out for a few days then reintroducing one to see what reactionit causes in the following hours then back to water, then try another.

Much the same with foods, sticking to safe foods that don't aggravate pain levels can help too. It's a very individual thing though, so don't expect to find written diets apply entirely to you, they won't.

You can google endo diet and find web pages on safe foods and recipe ideas. There are also endo diet cook books available free from the library, as well as online and in book shops.

Some ladies obtain relief from using a tens machine, but only with caution and probably best avoided if you do have any cyst spotted at the scan.

An injectable drug called Depo-Provera may help too- given every 3 months to try and stop the periods cycle, could prove useful if you do have some time to wait for surgery.

It's all a journey of trial and error to see what you can find that works best for you, but surgery is certainly the only way for endo to be removed. Good luck finding ways to be more comfy. All endo ladies are in the same boat trying to find what suits us best.

1 like

I'm with you and feel your pain physical and mental. X


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